Although GIST is among the few rare diseases that has available drug therapy treatment options, the cost of these lifesaving medications can sometimes impose deep financial hardship, depending on the terms of the patient’s insurance policy.

Mildred Menos currently serves as the Life Raft Group’s representative to the New Jersey Out-of-Pocket Prescription Cost Limit Coalition (NJ OOP Cost Coalition). The Coalition’s goal is to support state legislation and legislators who seek to lessen the financial burden of critical treatments to patients.

Currently, the most promising of these initiatives is Assemblyman Dan Benson’s bill A-2337, which requires health insurers to limit patient cost-sharing and provide an appeals process concerning certain prescription drug coverage. The Coalition continues to urge the Assembly Financial Institutions and Insurance Committee to support this critical legislation and refer the bill for consideration by the full Assembly. We would love to add the voice of LRG members to this important conversation.

The Issue: High cost-sharing is a barrier to care

For many years, insurers have used tiered cost-sharing in their drug coverage as a way to encourage patients to try lower-cost medications before turning to more expensive ones. Traditionally, costlier options would appear on the second or third tier of a health plan’s drug formulary — the list of medications covered by the plan — and the patient would pay a flat copay that increased moderately with each tier.

Today, however, it is common for formularies to include a fourth, fifth or even higher tier, where the cost-share is often a percentage of the actual cost of the medicine, rather than a flat copay. Known as coinsurance, this type of cost-sharing can require a patient to pay as much as 50 percent of a medication’s cost, which can translate to thousands of dollars in cost-sharing for just a one-month supply of a medication.

These higher tiers — usually referred to as specialty tiers — have come to include a significant number and range of medications, including drugs that have no generic or cheaper equivalent. Another emerging trend is for the highest-cost tier to contain all the medications available for a certain condition. For patients who need one of these treatments, even a generic option will involve a high cost-share.

The growing prevalence of high deductibles make this problem even worse. This year, the average combined deductible in bronze plans sold through state marketplaces is $5,249 and, in silver plans, $2,658 . These plans commonly require consumers to meet their full deductible before any coverage is provided.

Typically, specialty tiers contain medications taken only by one-to-five percent of the patient population.  These patients face diseases and conditions that — while relatively limited in incidence — are usually chronic, debilitating and/or often life-threatening. These include: cancer, multiple sclerosis, epilepsy, rheumatoid arthritis, HIV/AIDS, hemophilia and other rare diseases. Specialty tiers require these patients to shoulder a disproportionate share of the cost of their medications, thus negating the purpose their insurance is supposed to provide — which is to protect from financial hardship in case of serious illness —in the first place.

This benefit design is not only unfair, it is also potentially harmful to patient health. High cost-sharing has been shown to lower medication utilization and adherence,  leading to poor health outcomes and to an increase in longer-term costs associated with treating disease progression and complications. According to several studies, prescription abandonment rates increase significantly when patient cost-sharing exceeds $100.  Perhaps it’s not surprising, then, that drug adherence is a problem estimated to cost the U.S. $290 billion annually.

The Solution: Reasonable limits on out-of-pocket costs

We believe that A-2337 offers a straightforward solution to this issue: Depending on a health plan’s level of coverage, a patient cost-share for a 30-day supply of a medication would be limited to $100–$200. These limits would apply pre-deductible, meaning they would be applied to patients’ out-of-pocket costs, regardless of whether they have satisfied their plan’s deductible. Otherwise, patients with higher deductibles are unlikely to experience any improvement in affordability when they fill their prescriptions each month.

We encourage New Jersey LRG members to become involved in this important advocacy issue. Please write or call your Assembly representative to voice your support for this legislation (phone and email scripts are provided in the Advocacy section of the LRG website). Or, contribute your personal experience with high out-of-pocket drug costs and the impact it has had on you at the next Assembly hearing. You can keep your participation anonymous, if you choose. You can also narrate your story to an LRG writer if you would prefer not to write a statement.

To participate in this initiative, or to join the LRG’s Advocacy Committee and stay up to date on all global advocacy issues in which we are involved, please contact Mildred Menos at